<div dir="ltr"><span id="gmail-x_gmail-m_1041549388963959967gmail-m_-3311519333063162345gmail-m_-1806620617427420971gmail-m_-230623006047218691gmail-m_-6598520344884402498gmail-m_6647803654828934329gmail-m_-7896717877921958346gmail-m_6611382204109253914gmail-m_-4301417506107986435gmail-m_6549860851303704303gmail-m_8598836051799715984m_6641608021637345477m_-912280034653178863gmail-m_-8904008580444092705m_-4071487113291778927gmail-m_4269603686220890589gmail-docs-internal-guid-00a15c2f-7ef9-cacb-ecd3-28673d53841d" style="color:rgb(34,34,34);font-family:arial,sans-serif;font-style:normal;font-weight:400;letter-spacing:normal;text-align:start;text-indent:0px;text-transform:none;white-space:normal;word-spacing:0px;background-color:rgb(255,255,255);font-size:12.8px">
<p dir="ltr" style="line-height:1.38;margin-top:0pt;margin-bottom:0pt"><span style="background-color:transparent;color:rgb(0,0,0);font-family:"Times New Roman";font-size:10pt;white-space:pre-wrap">COURSE ANNOUNCEMENT</span><br>
</p>
<p dir="ltr" style="line-height:1.38;margin-top:0pt;margin-bottom:0pt"><span style="font-size:10pt;font-family:"Times New Roman";color:rgb(0,0,0);background-color:transparent;vertical-align:baseline;white-space:pre-wrap">Please circulate this email to those who might be interested.</span></p>
<p dir="ltr" style="line-height:1.38;margin-top:0pt;margin-bottom:0pt"><span style="font-size:10pt;font-family:"Times New Roman";color:rgb(0,0,0);background-color:transparent;vertical-align:baseline;white-space:pre-wrap"><span style="background-color:transparent;font-size:10pt"><br></span></span></p><p dir="ltr" style="line-height:1.38;margin-top:0pt;margin-bottom:0pt"><span style="font-size:10pt;font-family:"Times New Roman";color:rgb(0,0,0);background-color:transparent;vertical-align:baseline;white-space:pre-wrap"><span style="background-color:transparent;font-size:10pt">The National </span></span><span style="background-color:transparent;font-variant-numeric:normal;font-variant-east-asian:normal;color:rgb(0,0,0);font-family:"Times New Roman";font-size:10pt;white-space:pre-wrap;vertical-align:baseline">Centre for Rare Diseases, Istituto Superiore di Sanità (Rome, Italy), </span><font face="Times New Roman" color="#000000" style="font-size:small"><span style="font-size:13.3333px;white-space:pre-wrap">in collaboration with </span></font><span style="color:rgb(0,0,0);font-family:"Times New Roman";font-size:13.3333px;white-space:pre-wrap">ELIXIR-IIB, </span></p></span><span id="gmail-x_gmail-m_1041549388963959967gmail-m_-3311519333063162345gmail-m_-1806620617427420971gmail-m_-230623006047218691gmail-m_-6598520344884402498gmail-m_6647803654828934329gmail-m_-7896717877921958346gmail-m_6611382204109253914gmail-m_-4301417506107986435gmail-m_6549860851303704303gmail-m_8598836051799715984m_6641608021637345477m_-912280034653178863gmail-m_-8904008580444092705m_-4071487113291778927gmail-m_4269603686220890589gmail-docs-internal-guid-00a15c2f-7ef9-cacb-ecd3-28673d53841d" style="color:rgb(34,34,34);font-size:small;font-style:normal;letter-spacing:normal;text-align:start;text-indent:0px;text-transform:none;white-space:normal;word-spacing:0px;background-color:rgb(255,255,255)"><p dir="ltr" style="font-weight:400;font-family:arial,sans-serif;line-height:1.38;margin-top:0pt;margin-bottom:0pt"><font face="Times New Roman" color="#000000"><span style="font-size:13.3333px;white-space:pre-wrap"><span style="color:rgb(0,0,0);font-family:"Times New Roman";font-size:13.3333px;font-style:normal;font-weight:400;letter-spacing:normal;text-align:start;text-indent:0px;text-transform:none;white-space:pre-wrap;word-spacing:0px;background-color:rgb(255,255,255);float:none;display:inline"><span style="color:rgb(0,0,0);font-family:"Times New Roman";font-size:13.3333px;font-style:normal;font-weight:400;letter-spacing:normal;text-align:start;text-indent:0px;text-transform:none;white-space:pre-wrap;word-spacing:0px;background-color:rgb(255,255,255);float:none;display:inline">ELIXIR-NL, </span></span></span></font><span style="font-size:13.3333px;white-space:pre-wrap;color:rgb(0,0,0);font-family:"Times New Roman"">RD-Connect, </span><span style="font-size:13.3333px;white-space:pre-wrap;color:rgb(0,0,0);font-family:"Times New Roman"">EURORDIS, Orphanet, EuRRECa, European Reference Networks, EPIRARE and ICORD,
</span></p>
<p dir="ltr" style="font-weight:400;font-family:arial,sans-serif;line-height:1.38;margin-top:0pt;margin-bottom:0pt">
<span style="font-size:13.3333px;white-space:pre-wrap;color:rgb(0,0,0);font-family:"Times New Roman"">is pleased to announce the "6th International Summer School on Rare Disease and Orphan Drug Registries", including Bring Your Own Data Registries.
</span></p>
<p dir="ltr" style="font-weight:400;font-family:arial,sans-serif;line-height:1.38;margin-top:0pt;margin-bottom:0pt">
<font face="Times New Roman" color="#000000"><span style="font-size:13.3333px;white-space:pre-wrap"></span></font></p>
<p dir="ltr" style="font-weight:400;font-family:arial,sans-serif;color:rgb(34,34,34);font-size:12.8px;font-style:normal;letter-spacing:normal;text-transform:none;white-space:normal;word-spacing:0px;line-height:1.38;margin-top:0pt;margin-bottom:0pt"><span style="font-size:10pt;font-family:"Times New Roman";color:rgb(0,0,0);background-color:transparent;vertical-align:baseline;white-space:pre-wrap"><span style="background-color:transparent;font-size:10pt"><br></span></span></p><p dir="ltr" style="font-weight:400;font-family:arial,sans-serif;color:rgb(34,34,34);font-size:12.8px;font-style:normal;letter-spacing:normal;text-transform:none;white-space:normal;word-spacing:0px;line-height:1.38;margin-top:0pt;margin-bottom:0pt">
<span style="font-size:10pt;font-family:"Times New Roman";color:rgb(0,0,0);background-color:transparent;vertical-align:baseline;white-space:pre-wrap"><span style="background-color:transparent;font-size:10pt">COURSE DESCRIPTION:</span><br></span></p>
<p dir="ltr" style="margin-top:0pt;margin-bottom:0pt;color:rgb(34,34,34);font-size:small;line-height:1.38">
<font face="times new roman, serif"><span style="font-size:12.8px">Registries are key resources in order to increase timely and accurate diagnosis, improve patients management, tailor </span><span style="font-size:12.8px">treatments,
facilitate clinical trials, support healthcare planning and speed up research.</span></font></p>
<p dir="ltr" style="margin-top:0pt;margin-bottom:0pt;color:rgb(34,34,34);font-size:small;line-height:1.38">
<font face="times new roman, serif"><span style="font-size:12.8px">The course will provide participants with useful tools and methodologies for establish a registry, the quality of the </span><span style="font-size:12.8px">data
collected and how a registry is turned into a FAIR resource.</span></font></p>
<p dir="ltr" style="margin-top:0pt;margin-bottom:0pt;color:rgb(34,34,34);font-size:small;line-height:1.38">
<span style="font-size:12.8px"><font face="times new roman, serif">It intends: </font></span></p>
<p dir="ltr" style="margin-top:0pt;margin-bottom:0pt;color:rgb(34,34,34);font-size:small;line-height:1.38">
<font face="times new roman, serif"><span style="font-size:12.8px">i) to promote the establishment of Findable, Accessible, Interoperable, Reusable (FAIR) registries in </span><span style="font-size:12.8px">compliance
with IRDiRC and EU Recommendations; </span></font></p>
<p dir="ltr" style="margin-top:0pt;margin-bottom:0pt;color:rgb(34,34,34);font-size:small;line-height:1.38"><font face="times new roman, serif">
ii) to support cooperation among different registry <span style="font-size:12.8px">stakeholders and coordination with registries that are developed within European Reference Networks and National </span><span style="font-size:12.8px">Plans in the EU.</span></font></p>
<p dir="ltr" style="font-family:arial,sans-serif;margin-top:0pt;margin-bottom:0pt;color:rgb(34,34,34);font-size:small;line-height:1.38">
<span style="font-size:12.8px"><font face="times new roman, serif"><br>
</font></span></p>
<p dir="ltr" style="font-family:arial,sans-serif;margin-top:0pt;margin-bottom:0pt;color:rgb(34,34,34);font-size:small;line-height:1.38">
<span style="font-size:12.8px"><font face="times new roman, serif">The course is organized in two training modules with the following objectives:</font></span></p>
<ul style="font-family:arial,sans-serif;color:rgb(34,34,34);font-size:small">
<li><font face="times new roman, serif">the first one (“Rare Disease Registries”, September 10-12, 2018) will provide participants with useful tools </font><span style="font-family:"times new roman",serif;font-size:12.8px">and methodologies to plan, establish
and manage the registry activities.</span><br>
</li><li><font face="times new roman, serif">the second one (“Bring Your Own Data - BYOD”, September 13-14, 2018) will be a hands-on experience </font><span style="font-family:"times new roman",serif;font-size:12.8px">(Bring Your Own Data), where the attendees
work with FAIR data experts to make their data FAIR and linked </span><span style="font-family:"times new roman",serif;font-size:12.8px">to other data that has been made FAIR before.</span><br>
</li></ul>
<p dir="ltr" style="margin-top:0pt;margin-bottom:0pt;color:rgb(34,34,34);font-size:small;line-height:1.38"><font face="times new roman, serif">
The "6th International Summer School on Rare Disease and Orphan Drug
Registries" is open to health professionals, researchers, medical
specialists, registry curators, database managers and representatives of
patients’ associations involved in or intend to establish
a rare disease registry, including ERN registries.</font><br>
</p>
<p dir="ltr" style="font-family:arial,sans-serif;margin-top:0pt;margin-bottom:0pt;color:rgb(34,34,34);font-size:small;line-height:1.38">
<br>
</p>
<p dir="ltr" style="font-family:arial,sans-serif;margin-top:0pt;margin-bottom:0pt;color:rgb(34,34,34);font-size:small;line-height:1.38"><span style="font-family:"Times New Roman",Times,serif;font-size:10pt">Registration is possible for:</span><br></p><div style="font-family:"Times New Roman"">
<span style="font-family:"Times New Roman",Times,serif;font-size:10pt">- the first training module (Rare Disease Registries, Sept. 10-12, 2018)</span></div><div style="font-family:"Times New Roman""><span style="font-family:"Times New Roman",Times,serif;font-size:10pt"><br></span></div><div><span style="font-family:"Times New Roman",Times,serif;font-size:10pt">- the second training module (Bring Your Own Data- BYOD, Sept. 13-14, 2018)</span></div>
<div><span style="font-family:"Times New Roman",Times,serif;font-size:10pt"></span><font face="Times New Roman, Times, serif"><br>
</font><span style="font-family:"Times New Roman",Times,serif;font-size:10pt"> - or both (Rare Disease Registries and BYOD, Sept. 10-14, 2018).</span><font face="Times New Roman"><br>
<br>
</font></div>
</span>
<p></p>
<p dir="ltr" style="font-weight:400;font-family:arial,sans-serif;color:rgb(34,34,34);font-size:12.8px;font-style:normal;letter-spacing:normal;text-transform:none;white-space:normal;word-spacing:0px;line-height:1.38;margin-top:0pt;margin-bottom:0pt">
<span style="font-size:10pt;font-family:"Times New Roman";color:rgb(0,0,0);background-color:transparent;vertical-align:baseline;white-space:pre-wrap"><span style="background-color:transparent;font-size:10pt">FEE:</span><br></span></p>
<p dir="ltr" style="margin-top:0pt;margin-bottom:0pt;color:rgb(34,34,34);font-size:12.8px;line-height:1.38">
<font face="times new roman, serif">Registration is free of charge. </font></p><p dir="ltr" style="margin-top:0pt;margin-bottom:0pt;color:rgb(34,34,34);font-size:12.8px;line-height:1.38"><font face="times new roman, serif">Please, note that travel, subsistence and other costs incurred by the participants to attend the event are not covered by the organisers.</font></p>
<p></p>
<p dir="ltr" style="font-weight:400;font-family:arial,sans-serif;color:rgb(34,34,34);font-size:12.8px;font-style:normal;letter-spacing:normal;text-transform:none;white-space:normal;word-spacing:0px;line-height:1.38;margin-top:0pt;margin-bottom:0pt">
<span style="font-size:10pt;font-family:"Times New Roman";color:rgb(0,0,0);background-color:transparent;vertical-align:baseline;white-space:pre-wrap"><span style="background-color:transparent;font-size:10pt">VENUE:</span><br></span></p><p dir="ltr" style="font-weight:400;font-family:arial,sans-serif;color:rgb(34,34,34);font-size:12.8px;font-style:normal;letter-spacing:normal;text-transform:none;white-space:normal;word-spacing:0px;line-height:1.38;margin-top:0pt;margin-bottom:0pt"><span style="font-size:10pt;font-family:"Times New Roman";color:rgb(0,0,0);background-color:transparent;vertical-align:baseline;white-space:pre-wrap"><font style="font-size:small" face="Times New Roman" color="#000000"><span style="font-size:13.3333px;white-space:pre-wrap">Aula Rossi, Istituto Superiore di Sanità, Via Giano della Bella, 34 - Rome, Italy.</span></font></span></p>
<p dir="ltr" style="font-weight:400;font-family:arial,sans-serif;color:rgb(34,34,34);font-size:12.8px;font-style:normal;letter-spacing:normal;text-transform:none;white-space:normal;word-spacing:0px;line-height:1.38;margin-top:0pt;margin-bottom:0pt"><span style="font-size:10pt;font-family:"Times New Roman";color:rgb(0,0,0);background-color:transparent;vertical-align:baseline;white-space:pre-wrap"><span style="background-color:transparent;font-size:10pt"><br></span></span></p><p dir="ltr" style="font-weight:400;font-family:arial,sans-serif;color:rgb(34,34,34);font-size:12.8px;font-style:normal;letter-spacing:normal;text-transform:none;white-space:normal;word-spacing:0px;line-height:1.38;margin-top:0pt;margin-bottom:0pt">
<span style="font-size:10pt;font-family:"Times New Roman";color:rgb(0,0,0);background-color:transparent;vertical-align:baseline;white-space:pre-wrap"><span style="background-color:transparent;font-size:10pt">IMPORTANT DATES:</span><br></span></p>
<p dir="ltr" style="font-family:arial,sans-serif;color:rgb(34,34,34);font-size:12.8px;font-style:normal;letter-spacing:normal;text-transform:none;white-space:normal;word-spacing:0px;line-height:1.38;margin-top:0pt;margin-bottom:0pt">
<span style="font-size:10pt;font-family:"Times New Roman";color:rgb(0,0,0);background-color:transparent;vertical-align:baseline;white-space:pre-wrap"><b>Deadline for applications: 16 June 2018</b></span><span style="font-weight:400;font-size:10pt;font-family:"Times New Roman";color:rgb(0,0,0);background-color:transparent;vertical-align:baseline;white-space:pre-wrap">
</span><span style="font-weight:400;font-size:10pt;font-family:"Times New Roman";color:rgb(0,0,0);background-color:transparent;vertical-align:baseline;white-space:pre-wrap">Course date: 10-14 September 2018</span></p>
<p dir="ltr" style="font-weight:400;font-family:arial,sans-serif;color:rgb(34,34,34);font-size:12.8px;font-style:normal;letter-spacing:normal;text-transform:none;white-space:normal;word-spacing:0px;line-height:1.38;margin-top:0pt;margin-bottom:0pt">
<br>
</p>
<div style="color:rgb(34,34,34);font-size:small;font-style:normal;font-weight:400;letter-spacing:normal;text-align:start;text-indent:0px;text-transform:none;white-space:normal;word-spacing:0px;background-color:rgb(255,255,255)">
<p dir="ltr" style="font-family:arial,sans-serif;line-height:1.38;margin-top:0pt;margin-bottom:0pt"><font face="Times New Roman" color="#000000"><span style="font-size:13.3333px;white-space:pre-wrap"></span></font></p>
<p dir="ltr" style="font-family:arial,sans-serif;line-height:1.38;margin-top:0pt;margin-bottom:0pt"><font face="Times New Roman" color="#000000"><span style="font-size:13.3333px;white-space:pre-wrap"></span></font></p>
<p dir="ltr" style="font-family:arial,sans-serif;color:rgb(34,34,34);font-size:12.8px;font-style:normal;font-weight:400;letter-spacing:normal;text-transform:none;white-space:normal;word-spacing:0px;line-height:1.38;margin-top:0pt;margin-bottom:0pt">
<span style="background-color:transparent;color:rgb(0,0,0);font-family:"Times New Roman";font-size:10pt;white-space:pre-wrap">Full </span><span style="background-color:transparent;color:rgb(0,0,0);font-family:"Times New Roman";font-size:10pt;white-space:pre-wrap">details at: </span><a href="http://old.iss.it/cnmr/?lang=1&id=2795&tipo=3" id="gmail-LPlnk867289" class="gmail-OWAAutoLink" style="background-color:transparent;font-family:"Times New Roman";font-size:10pt;white-space:pre-wrap">http://old.iss.it/cnmr/?lang=1&id=2795&tipo=3</a></p><p dir="ltr" style="font-family:arial,sans-serif;color:rgb(34,34,34);font-size:12.8px;font-style:normal;font-weight:400;letter-spacing:normal;text-transform:none;white-space:normal;word-spacing:0px;line-height:1.38;margin-top:0pt;margin-bottom:0pt">
<br>
</p><p dir="ltr" style="font-family:arial,sans-serif;color:rgb(34,34,34);font-size:12.8px;font-style:normal;font-weight:400;letter-spacing:normal;text-transform:none;white-space:normal;word-spacing:0px;line-height:1.38;margin-top:0pt;margin-bottom:0pt"><br></p>
<p dir="ltr" style="font-family:arial,sans-serif;color:rgb(34,34,34);font-size:12.8px;font-style:normal;font-weight:400;letter-spacing:normal;text-transform:none;white-space:normal;word-spacing:0px;line-height:1.38;margin-top:0pt;margin-bottom:0pt">
<span style="background-color:transparent;font-size:10pt;font-family:"Times New Roman";color:rgb(0,0,0);vertical-align:baseline;white-space:pre-wrap">Should you have any question, do not hesitate to contact the Organisers at <a href="mailto:rareregistries-school@iss.it" style="color:rgb(17,85,204)" id="gmail-LPlnk347861" class="gmail-OWAAutoLink">rareregistries-school@iss.it</a></span></p>
<p dir="ltr" style="font-family:arial,sans-serif;color:rgb(34,34,34);font-size:12.8px;font-style:normal;font-weight:400;letter-spacing:normal;text-transform:none;white-space:normal;word-spacing:0px;line-height:1.38;margin-top:0pt;margin-bottom:0pt">
<span style="background-color:transparent;vertical-align:baseline"><font face="times new roman, serif"><br>
</font></span></p>
<p dir="ltr" style="font-family:arial,sans-serif;color:rgb(34,34,34);font-size:12.8px;font-style:normal;font-weight:400;letter-spacing:normal;text-transform:none;white-space:normal;word-spacing:0px;line-height:1.38;margin-top:0pt;margin-bottom:0pt">
<span style="background-color:transparent;vertical-align:baseline"><font face="times new roman, serif"><br>
</font></span></p>
<p dir="ltr" style="color:rgb(34,34,34);font-size:12.8px;font-style:normal;font-weight:400;letter-spacing:normal;text-transform:none;white-space:normal;word-spacing:0px;line-height:1.38;margin-top:0pt;margin-bottom:0pt">
<font face="times new roman, serif">We apologise for cross-posting.</font></p>
<p dir="ltr" style="color:rgb(34,34,34);font-size:12.8px;font-style:normal;font-weight:400;letter-spacing:normal;text-transform:none;white-space:normal;word-spacing:0px;line-height:1.38;margin-top:0pt;margin-bottom:0pt">
<font face="times new roman, serif"><span>Please, email us back with the word REMOVE as the subject line, if you don't want to receive </span>messages from ELIXIR-IIB Training anymore.</font></p>
<p dir="ltr" style="color:rgb(34,34,34);font-size:12.8px;font-style:normal;font-weight:400;letter-spacing:normal;text-transform:none;white-space:normal;word-spacing:0px;line-height:1.38;margin-top:0pt;margin-bottom:0pt">
<font face="times new roman, serif"><br>
</font></p>
<p dir="ltr" style="color:rgb(34,34,34);font-size:12.8px;font-style:normal;font-weight:400;letter-spacing:normal;text-transform:none;white-space:normal;word-spacing:0px;line-height:1.38;margin-top:0pt;margin-bottom:0pt">
<span style="background-color:transparent;color:rgb(0,0,0);font-size:10pt;white-space:pre-wrap"><font face="times new roman, serif">Kind regards,
</font></span></p>
<p dir="ltr" style="color:rgb(34,34,34);font-size:12.8px;font-style:normal;font-weight:400;letter-spacing:normal;text-transform:none;white-space:normal;word-spacing:0px;line-height:1.38;margin-top:0pt;margin-bottom:0pt">
<span style="background-color:transparent;color:rgb(0,0,0);font-size:10pt;white-space:pre-wrap"><font face="times new roman, serif">the Organisers.</font></span></p>
</div>
<br style="color:rgb(34,34,34);font-family:arial,sans-serif;font-size:small;font-style:normal;font-weight:400;letter-spacing:normal;text-align:start;text-indent:0px;text-transform:none;white-space:normal;word-spacing:0px" clear="all">
<div style="color:rgb(34,34,34);font-family:arial,sans-serif;font-size:small;font-style:normal;font-weight:400;letter-spacing:normal;text-align:start;text-indent:0px;text-transform:none;white-space:normal;word-spacing:0px">
</div><br clear="all"><div><br></div>-- <br><div class="gmail_signature" data-smartmail="gmail_signature"><div dir="ltr"><b>ELIXIR-IIB Training </b><div><a href="https://elixir-iib-training.github.io/website/" target="_blank">https://elixir-iib-training.github.io/website/</a><br></div><div><br></div><div><img src="https://docs.google.com/uc?export=download&id=0B0c7_C2GRNsQTEpVMXRDeDBiQnM&revid=0B0c7_C2GRNsQTXBhc2RHMythRmg2ZCtMeWx1NHBrMUZYMzVZPQ" width="96" height="72"><br></div></div></div>
</div>